LIVING WITH A SIBLING WHO HAS AUTISM SPECTRUM DISORDER by Marilia J. Carvalho A ...

164 Pages·2017·2.19 MB·English

by  Marilia Carvalho

LIVING WITH A SIBLING WHO HAS AUTISM SPECTRUM DISORDER

by

Marilia J. Carvalho

A thesis submitted in partial fulfillment
of the requirements for the degree o f
Master of Arts (M.A.) in Applied Psychology

Faculty of Graduate Studies
Laurentian University
Sudbury, Ontario

©Marilia J. Carvalho, 2017
THESIS DEFENCE COMMITTEE/COMITÉ DE SOUTENANCE DE THÈSE
Laurentian Université/Université Laurentienne
Faculty of Graduate Studies/Faculté des études supérieures

Title of Thesis
Titre de la thèse LIVING WITH A SIBLING WHO HAS AUTISM SPECTRUM DISORDER

Name of Candidate
Nom du candidat Carvalho, Marilia

Degree
Diplôme Master of Arts

Department/Program Date of Defence
Département/Programme Psychology Date de la soutenance September 13, 2017

APPROVED/APPROUVÉ

Thesis Examiners/Examinateurs de thèse:

Dr. Shelley Watson
(Supervisor/Directeur(trice) de thèse)

Dr. Diana Coholic
(Committee member/Membre du comité)

Dr. Sylvie Larocque
(Committee member/Membre du comité)
Approved for the Faculty of Graduate Studies
Approuvé pour la Faculté des études supérieures
Dr. David Lesbarrères
Monsieur David Lesbarrères
Dr. Shannon Wagner Dean, Faculty of Graduate Studies
(External Examiner/Examinateur externe) Doyen, Faculté des études supérieures

ACCESSIBILITY CLAUSE AND PERMISSION TO USE

I, Marilia Carvalho, hereby grant to Laurentian University and/or its agents the non-exclusive license to archive
and make accessible my thesis, dissertation, or project report in whole or in part in all forms of media, now or for the
duration of my copyright ownership. I retain all other ownership rights to the copyright of the thesis, dissertation or
project report. I also reserve the right to use in future works (such as articles or books) all or part of this thesis,
dissertation, or project report. I further agree that permission for copying of this thesis in any manner, in whole or in
part, for scholarly purposes may be granted by the professor or professors who supervised my thesis work or, in their
absence, by the Head of the Department in which my thesis work was done. It is understood that any copying or
publication or use of this thesis or parts thereof for financial gain shall not be allowed without my written
permission. It is also understood that this copy is being made available in this form by the authority of the copyright
owner solely for the purpose of private study and research and may not be copied or reproduced except as permitted
by the copyright laws without written authority from the copyright owner.

ii
Abstract
The document presented herein is a manuscript-based thesis, entitled: Living with a Sibling who
has Autism Spectrum Disorder (ASD). This thesis consists of an exploratory investigation to
learn more about the experiences of individuals who have a sibling with ASD. The data obtained
is discussed in two papers. The first paper focuses on the discussion of future caregiving which
involves the transference of care to siblings (with typical development) when parents are no
longer able to provide care. The scope of the second paper solely focuses on data obtained from
interviews using Interpretative Phenomenological Analysis (IPA; Smith, Flowers & Larkin,
2009). Siblings highlighted particular aspects of future caregiving that harboured concerns,
resulting in the discussion of four relevant themes. The second paper was guided by the Family
Adjustment and Adaptation Response (FAAR) Model (Patterson, 1988, 1989; Patterson &
Garwick, 1994) to explore the type of stressors that were experienced and whether adequate
supports were being utilized. To understand experiences specific to demands and supports, a
mixed-methods approach was employed. Informed by the FAAR, interview transcripts were
analyzed using Thematic Analysis (Braun & Clarke, 2006) , revealing four themes. Descriptive
statistics were also provided based on data obtained from two questionnaires: The Sibling
Inventory of Behaviour Scale (SIBS) and The Sibling Daily Hassles and Uplifts Scale (SDHUS).
Results concluded that siblings are constantly in the process of finding new resources and
developing new capabilities to manage demands across the life span. Clinical implications for
each paper are discussed further.
Keywords: The following keywords could be used to describe this thesis document entitle d:
Living with a Sibling who has Autism Spectrum Disorder: Autism Spectrum Disorder, Siblings,
FAAR, Stressors, Supports, Future Caregiving
iii
Acknowledgments
I would like to express my gratitude first and foremost to the siblings who participated in
this study. They shared some of their greatest memories and obstacles with me in an honest
manner. I am truly thankful for their trust in me and the directives of my thesis work. I was
inspired by their resilience and perspectives and I learned so much from their stories.
I would also like to thank my supervisor Dr. Shelley L. Watson and my committee
members, Dr. Diana Coholic and Dr. Sylvie Larocque. Each one of you took time from your
busy schedules to carefully read through all my chapters. Dr. Watson, thank you for your
patience and encouragement after each revision. It was a long journey but I felt that I had
become a stronger writer with your guidance. In addition, the feedback provided by my
committee members was invaluable and I am grateful for their support. Throughout this writing
process I know that I worked with a team of individuals with immense expertise and passion for
the field of developmental disabilities. Thus, I am happy to have shared my thesis experience
with them.
To my family, I would like to say thank you for your unrelenting support. There were
many times when I felt that giving up was my only option and your words of encouragement
were the reason I kept going. My family has inspired my passion for family research as I have
learned first-hand that there is no stronger bond than the ones shared with parents and siblings. I
would also like to thank my peers for their support and the laughs that we shared together. My
time at Laurentian University was my first experience away from home yet you all provided me
with a new sense of home, which I greatly appreciated.

iv
Table of Contents

Abstract .......................................................................................................................................... iii
Keywords ................................................................................................................................... iii
Acknowledgements ........................................................................................................................ iv
Table of Contents .............................................................................................................................v
List of Tables ............................................................................................................................... viii
List of Figures ................................................................................................................................ ix
List of Appendices ...........................................................................................................................x
Chapter 1: Introduction ....................................................................................................................1
1.1 Autism Spectrum Disorder .....................................................................................................2
1.2 Research on Families of Children with Typical Development ..............................................3
1.3 The Family Adjustment and Adaptation Response (FAAR) Model ......................................3
1.4 Families of Individuals with Autism Spectrum Disorder .......................................................6
1.5 The Comparison of Autism Spectrum Disorder to other Disabilities in Families .................8
1.6 Research on Siblings with Typical Development ................................................................10
1.7 Siblings of Individuals with Autism Spectrum Disorder .....................................................12
1.8 Purpose of the Research .......................................................................................................15
1.8.1 Research Question ....................................................................................................15
1.8.2 Rationale ...................................................................................................................15
1.9 Methodology ............................................................................................................................18
1.9.1 Participants ........................................................................................................................20
1.9.2 Questionnaires.......................................................................................................................22
1.9.3 Qualitative Interviews .......................................................................................................23
1.10 Reflexivity..............................................................................................................................25
1.10.1 The Researcher- Participant Relationship .......................................................................28
1.11 Conclusion ..........................................................................................................................30
1.12 Overview of Subsequent Chapters .....................................................................................31
“What Now?” Concerns and Worries of the Next Generation of Caregivers: An Analysis of
Future Caregiving when a Sibling has ASD ..................................................................................33
Abstract ..............................................................................................................................34
Introduction .....................................................................................................................35
v
Sibling Relationships .............................................................................................35
Sibling Caregiving .................................................................................................37
Methods..............................................................................................................................39
Participants .............................................................................................................40
Data Collection and Analysis.................................................................................41
Results ................................................................................................................................43
“What’s going to happen in the future? I have sleepless nights thinking about it”:
Uncertainty and Fear ............................................................................................43
“Obviously this is my responsibility, when my parents won’t be alive like, that
is…one day that’s going to happen” : Aging of Current Caregivers ......................46
“My mother’s not really putting it on me that I ne ed to actually take care of him
but…I’m probably going to end up being a guardian in some way” : Expectations
of Care ................................ ................................ ................................ ....................49
“Are we going to have a normal life, like everyone else?” : Making Sacrifices ...51
Discussion ................................ ................................ ................................ ..........................53
Limitations and Strengths ................................ ................................ ......................57
Trustworthiness of Data ................................ ................................ .........................58
Conclusion and Future Directions ................................ ................................ .....................59
References ................................ ................................ ................................ ................................ ..62
“We were all in survival mode”: The Balance between Demands and Capabilities when a Sibling
has Autism Spectrum Disorder ................................ ................................ ................................ ......69
Abstract ................................ ................................ ................................ ................................ ......70
Introduction ................................ ................................ ................................ ................................ 71
Families of Individuals with Autism Spectrum Disorder ................................ ..................71
Siblings of Individuals with Autism Spectrum Disorder ................................ ...................72
Supports for Siblings of Individuals with A utism Spectrum Disorder .............................. 73
The Family Adjustment and Adaptation Response (FAAR) Model ................................ ..74
Methodology ................................ ................................ ................................ .............................. 75
Participants ................................ ................................ ................................ .........................75
Qualitative Interviews ................................ ................................ ................................ ........77
Quantitative Questionnaires ................................ ................................ ............................... 78
Results ................................ ................................ ................................ ................................ ........80
vi
“Clara had a lot of bad behaviours it was, [I tried to] protect my mom […] when I was
younger, [she] would just beat my mom up all night, and that was really tough”:
Demands – Stressors, Strains and Daily Hassles ................................ ............................... 80
“Looking back, it might have been more helpful to have more sup port. I probably could
have used some one on one counselling”: Informal and Formal Supports ........................83
“I am very proud to be his sister. I feel like we can educate people about this population in
the world”: Advocating for Siblings with ASD ................................ ................................ .85
“It was a bit rough when we were children, but once we hit late teenage years, things got
really good. Now that we’re adults, things are awesome between us ”: Adjustment and
Adaptation ................................ ................................ ................................ ..........................88
Discussion ................................ ................................ ................................ ................................ ..92
Considerations and Future Directions ................................ ................................ ................95
Conclusion ................................ ................................ ................................ ................................ ..96
References ................................ ................................ ................................ ................................ ......97
Chapter 4: Discussion ................................ ................................ ................................ ..................102
4.1 Summary of Findings ................................ ................................ ................................ .........102
4.1.1 Future Caregiving ................................ ................................ ................................ ...102
4.1.2 Supports and Stressors ................................ ................................ ............................105
4.2 Applying the FAAR Model to Sibling Experiences ................................ ...........................107
4.3 Considerations and Recommendations for Future Research ................................ ..............109
4.4 Strengths of the Study ................................ ................................ ................................ ........114
4.5 Clinical Implications ................................ ................................ ................................ ..........117
4.6 Knowledge Translation ................................ ................................ ................................ ......122
4.7 Conclusion ................................ ................................ ................................ ..........................123
References ................................ ................................ ................................ ................................ ....125

vii
List of Tables

Table 1: Participant Demographic Characteristics ........................................................................21
Table 1: Participant Demographics ................................................................................................41
Table 1: Participant Demographics ................................................................................................76

viii
List of Figures

Figure 1: The Family Adjustment and Adaptation Response Model
(Patterson & Garwick, 1994) ...........................................................................................................4

ix
List of Appendices

Appendix A: Laurentian University Research Ethics Board Approval .......................................141
Appendix B: Study Flyer .............................................................................................................142
Appendix C: Interview Guide for Siblings ..................................................................................143
Appendix D: The Sibling Inventory of Behavior Scale ...............................................................144
Appendix E: The Sibling Daily Hassles and Uplifts Scale .........................................................146

x